I hope by now, you will agree with me that the description for parents of special needs kids: Common Warriors, is perfect. They truly are warriors as they live day in and day out meeting the ever-growing needs of their loved ones. My friend, Maryanne, author of the blog Sweet Surrender knows only too well of the challenges that have come with raising her daughter, Rachel. You see, Rachel and her twin, Adam were born early and Rachel experienced either a brain bleed or O2 deprivation leading to Cerebral Palsy.
Four things Maryanne has learned while raising Rachel into adulthood:
- I have had to really learn to lean into grace and forgive myself for growing tired, weary, discouraged, angry, and frustrated. I have often felt my capabilities as it related to Rachel’s care and the responsibilities of my other children were sorely outmatched. A mother of a disabled child must trust God’s grace to cover the bare places.
- It is very important for a mother to take care of herself by taking breaks, filling her soul with inspiration, beauty, and recreation. If a mother’s heart runs dry, she has nothing to impart to her children. This is especially true with the ongoing needs of a disabled child. I struggled here and often felt guilty for wanting time away.
If people offer to help- let them. Find time for your spouse even if it is taking a short walk or sitting outside on the deck enjoying time together. Live in FAITH and not FEAR!
Don’t get so caught up in the “what ifs” that you miss the sweet moments in the present.” Angie Beighley, Tim Beighley’s Mom
- I found it important to surround myself with safe people who were supportive and willing to give me the latitude to express my feelings. No mother should go this journey alone, especially the mother of disabled child. She needs support and additional help.
- Lastly, I have had to give myself permission to grieve the loss of the hopes and dreams I had for my daughter. This can be hard for parents to admit or articulate. This grief is an ongoing lifelong journey. I have found that the only way I can keep my heart open to the possibilities and blessings of Rachel’s life is to acknowledge my sadness, process it with God, and then surrender.
- I think Rachel has taught me more than she will ever learn from me. She is open and happy. I see absolutely no bitterness in her because of her condition. Sometimes I miss blessings because I am so hyper-focused on what’s wrong.” Maryanne Abbate, Rachel’s Mom
- Surrendering expectations was and continues to be a difficult part of this journey for me.
Another Common Warrior whom I have
met along life’s pathway is Amy, Mom to Jonah and Lily.
The main issues with Jonah are his cognitive ability not matching up with his verbal ability (expressive language). As Jonah’s Mommy, one of her main concerns now is the gap between the two…especially with a major heart surgery right around the corner, in summer 2016. How do you prep a by then, 4-year-old? Amy feels he has already been through so much, however she is also ecstatic that he is a fighter. Amy prays that he will be like David the rest of his life. Amy wants others to know that they were “blind” to this world once too.
Until you are placed in a situation … You can never really understand. But he chooses us all for different reasons. Amy considers the truth that perhaps God gives us more than we can handle so we fall on our knees in prayer to Our Mighty Father. We all mess up. There is no perfect parent. We are all just trying our personal best to make our children their personal best!
My sincere thanks to these three families for sharing their precious and personal journeys with each one of us.